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The Rights of Donor-Conceived Individuals to Access Information about Their Donors in Victoria

Monday, 1 July 2013  | Helen Kane


It is commonplace nowadays for people from all walks of life to “do their family history”. This is a natural expression of the need humans have to understand their origins. Knowledge of our origins, together with our sense of self in the present, contributes to our sense of identity. But there is a group of people in our society who have particular difficulties with knowing their biological origins because of the way that we as a society have participated in their creation and surrounded this with layers of ambivalence and secrecy. These are the people who were conceived with the use of donated gametes (sperm or eggs) or embryos.

The longest practiced use of donated gametes has been sperm and this is believed to have started in Melbourne in the 1940s with some private doctors providing this as part of their treatment for a couple when it was the man who was infertile. It required only the insemination of the woman in the doctor’s rooms, and so was very easily done, if the doctor was able to access fresh semen. Records were not kept or, at least, no longer exist.

In the 1970s, the large hospitals who provided gynaecological treatment in Melbourne began to provide artificial insemination using donated sperm as one of the options for infertile couples. In the late 1970s, it became possible to freeze sperm safely, and there were a number of changes as a result. Because sperm could be stored, more children were likely to be created than had been possible with the use of fresh sperm. So there were more children connected to each other through their common sperm donor.

A very significant change with this move into the larger health system was that records began to reflect the treatments provided, the results, and the participants.

Infertility treatment in Victoria began to be covered by legislation from 1984 and this introduced the rights of people to seek information but only from the point of implementation of that Act which was in 1988. Subsequent changes mean that the rights of donor-conceived people to seek and obtain information about their donor is dependent upon when they were conceived: there are pre-1988, post-1988 and post-2009 divisions, and this is inherently discriminatory. Your right—independent of your need—to know is regarded differently according to when the conception itself took place and where.

 

There are 3 basic requirements for any person being able to act upon their right to have information about their genetic history and their sense of who they are:

  1. They have to know they are donor-conceived. The practice in the past was to emphasize secrecy for all concerned. Parents were told not to tell their children or anyone else. Donors were told not to ask for or seek information. A secret sat at the centre of families with donor-conceived children with its own impact on how they functioned as a family.
  2. There have to be records relating to this. In the early days of insemination in private doctors rooms, there were no records, or they were destroyed when practices closed down. There is no way of finding out genetic history in these instances. There were practices within the medical system of separating details and files, and there are difficulties locating records, and making sense of the connections.
  3. There have to be ways of obtaining access to records and information. The current information system is fractured, with some information within infertility programs or hospitals, some in registry systems at Births Deaths and Marriages, some service aspects with FIND (Dept. Community Services), and some education aspects with VARTA. There is no simple, coherent way for a donor-conceived person to be able to enquire, to receive appropriate counseling and information (for which they are eligible), to seek to locate their donor, to make the contact, with support for him, both families, and themselves. The fact that the system is complex reduces the capacity of the person to act upon their rights. It is a complex emotional journey, and barriers reduce these rights in practice.

 

Parents, donors and donor-conceived people all have some rights under legislation to seek information about each other. But there are a variety of issues for all involved: both in terms of feelings about the situation and also how they want to manage the processes. Parents need assistance when dealing with the results of the secrecy that was the norm in the area, and its impact on relationships within the family. Donors need assistance when talking with their families, and also with dealing with the results of the enquiry: discovery that there are children, and, in some cases, many children. And the donor-conceived person is dealing with the complexities of how it feels, and how the system responds to their need to know.

All donor-conceived people in Victoria should have the same rights to seek information about their donor, no matter when their conception occurred. But this raises all kinds of issues for the individuals, and requires a responsive service system that is able to work with them and their families and donors.

In March 2012, the Law Reform Committee of the Victorian Parliament produced a report “Inquiry into Access by Donor-Conceived People to Information about Donors.” Additional information was then sought in relation to the donors themselves. This is to return to Parliament discussion soon. The recommendations include the granting of the right to seek identifying information to all donor-conceived people, regardless of when they were conceived. And it recommends a return to an integrated service system for all concerned.

 

 


Helen Kane,
B.S.W., Grad. Dip.S.W (Human Service Management)


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